BNOS 2026 – the congress for UK neuro-oncology, taking place from 1st–3rd July 2026 at the University of Birmingham. This year’s theme, “Local Therapies for Brain Cancer” highlights progress at the crossroads of neuro-oncology, biology, and technology – advances that are transforming treatment approaches and offering new hope for patients.
BNOS is the British Neuro-Oncology Society, you can read more about the Society here: https://www.bnos.org.uk/
What vorasidenib is, and how it works
Vorasidenib is the first targeted, tablet-form treatment for IDH-mutant low-grade glioma, and it is now
approved on the NHS in England (April 2026). It is not chemotherapy. Rather than attacking and
shrinking the tumour quickly, it switches off the faulty IDH signal that drives the tumour to grow. So
“stable disease” is a genuinely good result, and any shrinkage tends to be slow and gradual, often over
years.
The latest trial results (INDIGO)
The INDIGO trial compared vorasidenib with a placebo in people who had had surgery but no other
treatment. With longer follow-up (median around 3.5 years), the picture is encouraging:
● People are staying on it. 58% were still taking the drug after more than three years, which reflects
how well it is tolerated.
● The benefit lasts. At four years, around half of people on vorasidenib were still free of tumour
progression, and roughly three-quarters had not yet needed any further treatment.
● It works gradually. The average time to see a response was about 16 months, and responses
tended to deepen the longer people stayed on treatment.
● Seizures and quality of life. Vorasidenib reduced seizure frequency over time (seizures tended to
increase on placebo), and quality of life was preserved.
The patient and caregiver voice
After NICE’s initial draft decision not to recommend the drug, a coalition of charities ran a short survey
and heard from 1,300 people in under two weeks. 99% wanted vorasidenib approved on the NHS, and
86% described unmet need in current treatment and care. People spoke about wanting not just to
survive but to live, so to keep working, driving and managing daily life and valued a treatment taken at
home that reduced hospital travel and could delay harsher treatments. The eventual approval was felt
as a landmark moment of hope, and a reminder that patient and caregiver experience must sit
alongside cost frameworks in these decisions.
How it is working in real UK practice
A survey of UK centres (30 responded, 20 already using the drug) and a detailed look at one centre (4
people started) told a consistent story: vorasidenib is safe and valued, but delivering it takes significant
resource. The main side effect is a rise in liver enzymes which is common but usually mild, with serious
cases uncommon (under 10%) and typically appearing in the first few cycles. This means frequent
blood tests early on are needed. Teams are responding with phone and video clinics, nurse-led and
pharmacist-led monitoring, and also home blood-taking, to keep hospital trips to a minimum.
The bottom line
Vorasidenib is a slow, steady treatment that can protect quality of life and help with seizures. Stable
disease is success, and it does not replace surgery. People should expect regular monitoring,
especially in the first few months. Access has improved, but the clear message across the session was
that patient and caregiver voices remain essential in shaping how it is used.
The papers presented in this session
Free Papers 137 & 138 Phase 3 INDIGO trial of vorasidenib versus placebo: updated efficacy, safety
and exploratory analysis of seizures and quality of life. Prof Catherine McBain
Free Paper 35 Access to Vorasidenib for Low-Grade Glioma in the UK: Voices of Patients, Carers and
Clinicians. Miss Shannon Winslade
Free Paper 102 Real-world Use of Vorasidenib in Adult IDH1/2-Mutant Low-Grade Glioma Across UK
NHS Trusts. Mr Abraham Sondhi
Free Paper 145 Implementing Vorasidenib in Clinical Practice: A Single-Centre Real-World Service
Evaluation. Dr Brooke Smart
